What is the aim of palliative care?
Palliative care allows people with advanced cancer to enhance their quality of life in a way that is meaningful to them. It supports families and carers in their adjustments to some of the lifestyle changes they also have to face.
What is the role of palliative care?
- to help you achieve and maintain the best quality of life that you can for as long as possible
- to make sure your physical, practical, emotional and spiritual needs are catered for
- to help you feel in control of your situation
- not to prolong or shorten life but, to make the time you have available as valuable as can be for you and your family.
Palliative care incorporates a range of services offered by medical, nursing and allied health professionals, as well as volunteers and informal carers. This is called a multidisciplinary approach.
You will have regular appointments with your health carers so they can monitor and adjust your treatment and the care you may require. This helps to prevent or resolve any problems that may arise because of the illness.
Does it mean end-of-life care?
Palliative care is not simply about dying. It’s about living for as long as possible in the most satisfying way you can, within the limits of your illness.
While some people may only use palliative care services for a few weeks or months, the number of people receiving palliative care for several years is increasing. Because improved treatments can help stop the spread of cancer and relieve side effects, cancer is considered a chronic illness for many people.
One reason that some people don’t access palliative care services early – or at all – is because they are afraid that by doing so, it somehow means they have given up hope or are going to die soon. The reality is that some people do die from cancer. As people draw closer to death, then end-of-life care becomes an important aspect of palliative care.
Does it prolong life unnecessarily?
The role of the palliative care team is to provide specialised multidisciplinary care. The team does not try to prolong life but tries to enhance people’s quality of life and help them with any changes and end-of-life issues in their preferred place of care.
Is it the same as euthanasia?
Palliative care and euthanasia are not the same thing.
Palliative care is about coordinating medical and support services so that someone with a life-limiting illness is made as comfortable as possible. Palliative care can help a person maintain quality of life, but it does not aim to lengthen or shorten life.
Euthanasia is when a person’s life is deliberately ended so that they avoid suffering from an incurable condition or illness. It is illegal in every state and territory in Australia.
How can palliative care help?
The palliative care team is there to help make life easier for you, your family and carers.
The general benefits of palliative care include:
- If you’re at home, the team helps to keep you out of hospital by regularly checking up on you, either by phone or a house visit.
- Your care is coordinated by one person, usually a community nurse or a palliative care nurse, who communicates with all members of the team on your behalf.
- Communication with the team may help reduce feelings of isolation or not being able to cope.
- Learning how to make adjustments around the house can reduce stress for both you and your family.
- Support given to your family helps them to be more effective in looking after you.
- The palliative care team can help you plan for your future needs (such as the type of care you may need or where you will receive the care).
- Gives you and your family emotional support, particularly if you are close to dying. Your team can talk to you about any needs or desires that you may have, and can help you achieve your goals. Some people have specific end-of-life wishes; others seek to make the most out of each day.
- Can help you and your family deal with issues of loss and grief. Your family may be eligible for bereavement counselling, although this is not available in all areas. The palliative care team will be able to direct you or your family members to bereavement information and resources.
When can I access palliative care?
It’s advisable to access palliative care as early as possible, even if it’s just to make contact with the palliative care team.
You can find out what the different team members do and which services might be relevant now or in the future. Being able to deal with problems earlier rather than later will help reduce stress on you and your family.
You can have palliative care for as long as you need: you may live comfortably for months or years; or your illness may advance rapidly so that your care is focused on end-of-life needs soon after your referral. Whatever stage you’re at, your team will continually assess your changing needs and will adjust your care as required.
Who will organise my care?
The way you receive palliative care depends on your situation:
- Your primary health care provider, such as a GP or a community nurse, may coordinate your palliative care.
- If your needs are complex and beyond the scope of care of your primary health care providers, you may be referred to a specialist palliative care team. If your condition improves, or you no longer need the assistance of the specialist team, your GP or community nurse can become involved again.
You generally need a referral, so you should speak to your GP or community nurse.
Once you’ve been referred, the team will always consult your GP or nurse about your care and treatment. It is also important for your key family members or carers to participate in these discussions, as they often will be providing most of your ongoing, day-to-day care.
Where do I receive palliative care?
You can have palliative care in different places depending on your situation, where you live and the support available to you.
- At home
- An aged care or residential care facility
- Palliative care unit
Patients can move between these settings if their needs change.
If you are cared for at home, you and your carers can be supported by community palliative care services.
Many people prefer to receive palliative care at home, but they may feel that they will be too much of a burden on their family. An important role for the palliative care team is to assess the best place for your care. They will consider your home environment and your support networks before discussing the options with you, your family and carers.
Will I lose my independence?
The palliative care team gives you choices to help you remain independent for as long as possible. An example is getting a ramp installed at home so you don’t have to use the steps. The team respects your wishes if you don’t want to take up their suggestions.
Will I still have medical treatment?
Medical treatment for palliative patients is an important part of care. It aims to manage the physical and emotional symptoms of cancer without trying to cure the disease. Some examples of palliative medical treatment are:
- radiotherapy to reduce pain when cancer has spread to the bones
- chemotherapy to stop the cancer growing into other organs
- medication to relieve constipation, nausea or pain
- medication for depression, anxiety or insomnia.
Do I have to pay?
The Commonwealth and State Governments fund core palliative care services so that they are free in the public health system whether you receive care at home or in a public setting. However sometimes you may need to contribute to the costs of care. Some examples are:
- hiring specialised equipment for use at home
- paying for your own nursing staff if you elect to stay at home and require round-the-clock assistance
- paying for massage therapy used with physiotherapy services
- paying an excess if you have health insurance that covers palliative care and you go to a private hospital
- accessing respite services that may charge a small fee
- seeing a complementary therapist in private practice
- paying a dietitian’s fee that is not covered by a Medicare rebate.